Marfan syndrome is a connective tissue disorder that affects many different organ systems. In some cases, indications of Marfan syndrome can be recognized at birth, but the majority will show up later in life.
The American Academy of Pediatrics published a clinical report, "Health Supervision for Children and Adolescents With Marfan Syndrome," in the April 2023 issue of Pediatrics. Authors of the report say that individuals with Marfan syndrome will be affected differently.
What children with Marfan syndrome have in common
The main that children and young people with Marfan syndrome have in common is the significant impact it has on daily activities and perceived quality of life. A timely diagnosis paired with a team of multidisciplinary health care providers can make a difference.
How pediatricians can help
In addition to monitoring children with Marfan for health complications that may affect the bones, heart and blood vessels, eyes, skin, lungs and other body systems, pediatricians can provide routine
depression screening. Especially in adolescence, this may help identify individuals who need more support or intervention. Also, many of those affected by Marfan syndrome benefit from networking and peer relationships.
The importance of a medical home
Equally important is the presence of a medical home that serves as an essential framework in the care of children and adolescents with special health care needs. The medical home provides care coordination among the medical specialties providing optimal and efficient health care for the patient and family.